February 2014 was a significant time in the life of my family. For years we saw our younger son regularly suffer bleed after bleed. He suffered from an inhibitor and an allergy to factor. Nothing seemed to help. We felt lost and unsure about how to continue seeking treatments. Doctors did the best they could, yet still “MacDonald the Younger” struggled with a horrible target joint (the right knee). He could not walk and would often complain of bleeding and pain.
We felt trapped and unable to help him. At our lowest, our amazing hematologist walked in the room to present a new way forward with treatment. “Your son needs a road map,” he said. So started a dialogue between my family and the medical team. We supplied crucial information about my son’s home and school life to give the medical team a more balanced idea of life in the MacDonald household.
And thus we started a treatment plan that began a long journey of healing and re-entering our places in the world. Little did we know, but that hospital visit would be our last for an internal bleed.
As my boy grew healthier, he enjoyed the freedom that came with feeling better. The wheelchair gave way to a walker, and the walker gave way to walking on his own. The road map gave us a clear picture of how to move forward with an effective treatment plan. Bound no longer by restraints, my son enjoyed his new taste of freedom. Treatment continued daily, and we administered Factor VIII through a port-a-cath. While it took about 15 minutes every day, we didn’t care. We had our lives back.
Then came another change. The medication Hemlibra revolutionized our treatment regimen. The product allowed us to infuse once a week via a tiny needle used for subcutaneous injections. We did not need the port, nor a vein. In the twinkling of an eye, the quality of life improved in ways that were considered science fiction when newly diagnosed. Now, life is even better because we moved to one shot every two weeks.
Looking back over the 20-plus years since “MacDonald the Older’s” diagnosis, we witnessed many changes in the quality of life and cared for the bleeding disorder community. Never in our wildest years did we expect to see such incredible advances in the care and treatment of hemophilia. Our boys are living, free of the ravages of internal bleeding. Many of us considered our new-found circumstance as miraculous. Where we go from here, we don’t know, but we look toward a future filled with endless possibilities.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.
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